What I’d Tell My Newly Diagnosed CTEPH Self
What would you say to yourself at the moment everything changed? In this honest and inspiring talk, Derek Henderson of Toronto reflects on what he would tell his newly diagnosed self after learning he had CTEPH in 2012. From the shock of no longer being able to bike to undergoing PEA (PTE) surgery and adapting to lifelong blood thinners, Derek shares a journey shaped by resilience, humor, and hard-earned perspective. Guided by his motto — “If you’re going to be a duck, lea
Living, Grieving, and Leaving a Legacy
Living Grief Like many of you, I was raised in a culture where death was darkness, morose and devastating. When we wore black and spoke in hushed tones around the topic, bit never directly about it. IT... the word was taboo. Analogies of "going to sleep forever" and "crossing over to a better place" made the subject unattainable. My arm’s length relationship with death shrouded its mystery in a dark cloak. And then, at 37 years young, I learned that PAH was taking over. I h
The Call: The Power of Having a Say
Today I received the first phone call. An unknown doctor. Emotionless and professional, her question strikes quickly to the task at hand: "I have received paperwork. Tell me what's going on." Okay, big breath, I've been preparing for this... and yet I am disarmed by the sudden line of questioning from a stranger. Something deep within propels me forward and I find the simple words to define my truth: "I have been living with pulmonary arterial hypertension for 5 years. IV me
World-wide PH empowerment!
In late 2025, the Pulmonary Vascular Research Institute (PVRI) brought together people with pulmonary hypertension (PH) from around the world to create a series of short videos focused on empowerment—told by patients, for patients. Canada’s own Jane Sernoskie is featured in the video “Become a patient expert and advocate.” Thank you, Jane, for sharing your voice, and congratulations on being part of this international initiative. "Living with pulmonary hypertension (PH) is a
A Tag Team of Rare Disease Education by Kate Salonga
On Saturday, October 25th, I attended the Scleroderma Association of BC’s 2025 AGM and conference. For those unfamiliar - like myself a few weeks ago - scleroderma and pulmonary hypertension have a very interesting relationship, which is why PHA Canada usually has a booth set up at this annual meeting. Scleroderma is an autoimmune disease that causes hardening and/or thickening of the skin and internal organs. Sound familiar? That’s because scleroderma patients are at risk of
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